Understanding Bowel Disturbance

The following information is for men who are making a decision to have specific treatment or have already received treatment for prostate cancer. It contains information to help you understand important issues about bowel disturbance, incontinence and management following prostate cancer treatment. It may also be helpful for your partner to read this information.

This booklet is for men who are making a decision to have a specific treatment or have already received treatment for prostate cancer. It contains information to help you understand important issues about bowel disturbance, incontinence and management following prostate cancer treatment. It may also be helpful for your partner to read this booklet.

Your cancer journey

After being diagnosed with prostate cancer, it’s common for you to see a number of health professionals with different expertise who work together as a team, called a multidisciplinary team (also known as a healthcare team). Best practice treatment and supportive care for people with cancer involves a team of different health professionals. Each team member brings different skills that are important in managing care and in making decisions around your individual needs. The team includes health professionals who are involved in diagnosing your cancer, treating your cancer, managing symptoms and side effects and assisting you with your feelings or concerns during your cancer experience.

The cancer journey is your personal experience of cancer. It’s not the same for everybody, even with the same type of cancer. Depending on your stage of prostate cancer and other underlying conditions, your experience may be quite different to somebody else’s.

As the diagram Your cancer journey shows, it can be useful to think of the journey in stages that may include detection, diagnosis, treatment, follow-up care and survivorship. For some, it may include end of life care. Take each stage as it comes so you can break down what feels like an overwhelming situation into smaller, more manageable steps.

For some men, the impact of treatment may be minimal or quickly resolved. For others, this impact can be more difficult, requiring further support and help. The aim of this booklet is to provide you with information that you can then use as a guide to further discussions with your doctor and healthcare team about your situation. Being informed enables you to participate in decisions about your care and leads to improved experiences and better care.

This booklet contains information on:

possible bowel side effects of some treatments for prostate cancer

why bowel problems can occur following treatment

helpful strategies for managing these problems

people and resources that can help.

The cancer journey is your personal experience of cancer. It’s not the same for everybody, even with the same type of cancer.

Managing bowel issues after prostate cancer diagnosis

Not all treatments for prostate cancer will result in bowel problems. For some men, however, side effects of treatment involving the bowel can require further support and help. It is important to talk to your doctor and healthcare team about any bowel problems you are experiencing. They understand your individual situation and are able to give you the most relevant advice.

UNDERSTANDING BOWEL SYMPTOMS AND PROSTATE CANCER

To understand how your bowel can be affected by prostate cancer, you first need to understand how your body works.

The prostate is a small gland below the bladder and in front of the rectum in men. It surrounds the urethra, the passage to the penis through which urine and semen pass. The location of the rectum (the lower part of the bowel) next to the prostate explains why some of the prostate cancer treatments can cause bowel symptoms in some men. This close location is shown in the following diagram:

THE MALE REPRODUCTIVE SYSTEM

After radiotherapy, bowel incontinence can affect quality of life for 1 in 5 patients.

WHAT ARE BOWEL SYMPTOMS?

Before your prostate cancer diagnosis, you might have experienced bowel problems for other reasons. These prior symptoms could return or be made worse by your treatment. After treatment, any new symptoms may or may not be related to your treatment and its effects on your bowel. Discuss this with your healthcare team.

It is important to let your doctor know as soon as possible if you experience bowel problems.

Bowel symptoms following prostate cancer treatment may include:

diarrhoea

constipation

leakage/soiling (bowel incontinence)

wind/gas

sudden and urgent need to open your bowels (urgency)

rectal bleeding.

These symptoms can vary from mild to more severe forms.

WHAT IS BOWEL INCONTINENCE?

Bowel incontinence (also known as faecal incontinence) can be described as accidental leaking of faeces. The amount of leakage may vary from a drop to total loss of bowel control. After radiotherapy, bowel incontinence can affect quality of life for 1 in 5 patients.

The main issue with bowel incontinence is that it is rarely discussed or reported by men, so it is not highlighted as a major concern. Men can often overcome their distress by seeking advice and assistance from the healthcare team.

WHY DO I HAVE BOWEL SYMPTOMS FOLLOWING TREATMENT?

Bowel symptoms usually occur due to a weakening of the control muscles surrounding the rectum and inflammation in the bowel. These control muscles are called the internal and external sphincter.

There are many causes of bowel incontinence after treatment including:

faster digestion

bacterial growth in the bowel

treatment medications

fatty and high carbohydrate foods

psychological factors

muscle weakness.

The types of symptoms you experience can relate to the type of treatment you have.

SYMPTOMS FOLLOWING PROSTATE CANCER SURGERY

Bowel symptoms are not an expected side effect of prostate cancer surgery. Report any bowel changes that occur after surgery to the healthcare team.

Constipation can be a problem immediately after surgery. To prevent constipation after the operation, it is important to:

follow any dietary instructions from your healthcare team

eat a healthy, well balanced diet including fruit, vegetables and high fibre foods

exercise regularly; but only after discussing with your healthcare team

drink plenty of water each day

use medications; you may be prescribed medications (laxatives, stool softeners) by your urologist to maintain regular soft bowel actions in the short term following your surgery.

Pushing or bearing down to expel a hard motion can affect the repair of the surgical site and the pelvic muscles that maintain continence. This is a key reason to attend to constipation without delay. The steps listed above can prevent damage after the operation.

If you develop any bowel symptoms after the surgery, discuss this with your treating doctor as soon as possible.

SYMPTOMS FOLLOWING RADIOTHERAPY

There are two main types of radiotherapy – external beam radiotherapy (EBRT) and brachytherapy. The difference is whether the treatment is applied from outside the body (EBRT) or delivered from within the prostate (brachytherapy).

EXTERNAL BEAM RADIOTHERAPY

External beam radiotherapy (EBRT) uses high energy X-ray beams that are directed at the prostate from the outside to destroy cancer cells.

Men treated with EBRT often have worse bowel function and are more bothered by it than men treated surgically.

Symptoms you may experience from EBRT are:

diarrhoea

gas and bloating

blood in your stool or passing of blood

urgency to have a bowel motion

increased bowel frequency

abdominal pain and discomfort when passing bowel motions

bowel incontinence.

Speak to a member of your healthcare team if you have any bleeding from the back passage and for suggestions that are specific to your needs.

BRACHYTHERAPY

Brachytherapy is when radioactive material is inserted directly into the prostate. It is given at either a high dose rate (HDR) or low dose rate (LDR).

You may have mild bowel problems in the first year after brachytherapy. Symptoms may even start two or three years after treatment. You may experience rectal bleeding or need to empty your bowels more often. If you are also having external beam radiotherapy, you are more likely to have bowel problems. Tell your doctor about any symptoms, as there are treatments available that can help.

High Dose Rate: is given by inserting radioactive material directly into the prostate. Unlike LDR seeds, the placement of the material is temporary and for shorter periods. As a result, the side effects for HDR can be similar to LDR seeds but usually shorter duration.

Low Dose Rate: is given by implanting permanent radioactive seeds directly into the prostate. The seeds give off concentrated amounts of radiation to the prostate with the aim of killing the cancer cells.

Side effects usually start to occur anywhere from 1 – 6 weeks after LDR brachytherapy. Some patients may experience ongoing problems, but serious long term side effects are uncommon. Some of these may include persistent rectal bleeding and diarrhoea.

Discuss your feelings with someone close, this may help you cope and make sense of your situation.

SYMPTOMS FOLLOWING CHEMOTHERAPY

Chemotherapy uses drugs to destroy cancer cells in advanced prostate cancer when the cancer has spread to other parts of the body. The medication reaches cells through the bloodstream and may also affect healthy cells in your body.

Some chemotherapy drugs can cause constipation or diarrhoea. If you experience any of these symptoms for longer than a couple of days, let your treating doctor know. Prolonged episodes of diarrhoea can cause dehydration and will need to be treated.

SYMPTOMS FOLLOWING HIGH INTENSITY FOCUSED ULTRASOUND (HIFU) THERAPY

HIFU is an emerging therapy which uses intense heat applied through the rectum to destroy the prostate and the contained prostate cancer. It is useful in older patients who are unsuitable for surgery or radiotherapy.

HIFU can cause a burning sensation or some bleeding from the rectum. This is most common in patients treated with multiple HIFU sessions.

Very rarely, HIFU causes a hole (fistula) between the urethra and the rectum. This affects less than 1 in 100 men (1 per cent). It is more common for men who have already had radiotherapy. Recent studies suggest that about 3 in 100 men (3 per cent) who have HIFU after external beam radiotherapy develop a fistula.

Sometimes pain and infections of the urethra can be early signs of a fistula, although there may be other causes. Contact your doctor or nurse if your urine is strong smelling or you have a temperature after the treatment, as these could be signs of an infection. Discharge from the urethra or discharge or diarrhoea from the rectum after HIFU may also be signs of a fistula. If you develop a fistula, you may need to have an operation to repair the hole.

Bowel symptoms are not an expected side effect of prostate cancer surgery. Report any bowel changes that occur after surgery to the healthcare team.

STRATEGIES TO MANAGE DIARRHOEA

Diarrhoea is frequent and watery bowel movements. Ask your treating doctor or nurse about what to expect and when to report diarrhoea.

Drink plenty of fluids to prevent dehydration. Water and diluted cordials are better hydrating fluids rather than high sugar drinks, alcohol, strong caffeine or very hot/cold fluids which may worsen diarrhoea.

Avoid highly spiced and fatty/oily foods.

Oral rehydration drinks may be needed to replace lost electrolytes. See your pharmacist for information on these products.

Sometimes temporary intolerance to lactose (sugar found in milk) or fructose (sugar found in fruit) can cause diarrhoea. In such cases it may help to change to soy milk or low lactose milk until the diarrhoea resolves.

After the diarrhoea has cleared up, it is important to slowly reintroduce a healthy eating plan that includes fresh fruits, vegetables, wholegrain breads and pasta.

Talk to your dietician about whether there are any individual dietary strategies that may help you manage diarrhoea.

Write down how many runny bowel movements you have in a day so you can report this to your doctor.

Tell your doctor about any bloody bowel movements you may have.

Speak to your doctor and healthcare team about medicines you can take to help you.

Consult your doctor before making any changes to your diet, and if you have ongoing diarrhoea. Your doctor can determine the cause, prescribe medication or refer you to a dietician to provide suitable alternatives.

Keep the area around your anus clean and moist to prevent skin irritation. After each bowel movement, wash your anal area with warm water and gently pat dry.

STRATEGIES TO MANAGE CONSTIPATION

Constipation is the passing of hard, dry bowel motions (stools). Symptoms include needing to open the bowels less often than usual, straining to pass the motion, bloated abdomen or abdominal cramps.

Ask your treating doctor or nurse about what to expect and when to report constipation.

Drink plenty of fluids, at least eight to twelve glasses per day (2–3 litres), e.g. water, fruit juice, herbal tea, milk–based drinks or soup. This helps to keep stools soft. A glass of warm liquid whenyou first get up in the morning may help your bowels to start moving.

Consume a variety of fibre-rich foods, such as wholegrain breads, cereals, pasta, fruit, vegetables (especially raw and unpeeled), nuts and seeds, legumes and pulses such as baked beans, lentils and chick peas.

Fresh orange, apple, pear or prune juices are possible alternatives to a fibre rich diet, especially for those people on fluid diets.

Try to get into a regular routine with your meals, which can help to regulate the digestive processes.

Try some gentle exercise, such as walking each day. Talk to your doctor, physiotherapist or exercise physiologist about the amount and type of exercise that is right for you.

Try not to push hard during bowel movements as this may give you itchy, painful haemorrhoids (swollen veins around your anus).

Speak to your doctor and healthcare team about medicines you can take to help you, including any over-the-counter medicines (medicines you buy without a prescription from your doctor).

Ask your treating doctor or nurse about what to expect and when to report diarrhoea.

STRATEGIES TO MANAGE INCONTINENCE

You might be embarrassed to talk about bowel incontinence. But talking to your healthcare team, partner and carers may be the key to managing this side effect and reducing your isolation. Continence nurses and continence physiotherapists are trained to advise you about your specific situation. Good information, being prepared and having an understanding, informed support network will help you form a bowel continence management strategy.

Continence products: There are a range of continence products that can help manage bowel incontinence. Pads are an effective first choice. Pads specifically designed for men are available from supermarkets or pharmacies. Pads are to be worn with firm fitting underwear, not boxer shorts. Ensure you change pads regularly, keeping your skin clean and dry to avoid irritation. If you require assistance with continence products, please seek advice from a health professional. Continence nurses can provide advice, including information on possible financial assistance schemes to assist with the costs of continence products.

Pelvic floor muscle exercises: The pelvic floor muscles span the bottom of the pelvis and support the pelvic organs, the bladder and bowel. The anus has two rings of muscle around it called the internal and external sphincter (see diagram above).

INTERNAL AND EXTERNAL ANAL SPHINCTER

The outer ring, the external sphincter, is a voluntary muscle that can be made stronger by doing exercises. Pelvic floor exercises can assist with managing bowel incontinence and bowel urgency by tightening the muscle and focusing on bowel control to stop leakage or incontinence.

GETTING OUT AND ABOUT

As you recover, you can overcome the fear associated with urgency and incontinence and take back control of your life. With encouragement from your family, friends and care team, courage to explore and trial new behaviours, flexibility and a good plan, you can, over time, gain the experience you need to get back your confidence and regain your life.

You may need to develop a ‘survival kit’. This can take many forms, but some basic considerations could include:

a carry bag of suitable size, with organized compartments

medication container – may require several sections

lubricant or skin cream

gloves – correct size is important

underwear (not jockey shorts)

tissues

cleansing wipes – pre-moistened, alcohol free baby wipes are suitable

large plastic backed, disposable undersheet – useful if cleaning up away from a bathroom area

lockable plastic bags with ziplock or fasteners – various sizes depending on need

clothing change

deodorizing spray – not perfume

hand cleanser gel

bottled water

pads – experiment with the wide variety available for those that are most suitable to your comfort and purpose.

Most of these items can be found in the personal care section of the supermarket or at the pharmacy.

Plan your trip

Prepare before you go. Be aware of your timing, route, meals and hydration. You may wish to take some of the foods which you know do not aggravate your symptoms.

Toilet maps can be helpful in locating toilet facilities in unfamiliar areas or when planning outings. Australia-wide maps are available (see www.toiletmap.gov.au).

Remember, when in public facilities disabled toilets have rails, fixtures and disposal bins.

Information from your diet diary can enable you to select venues and menus with greater confidence when you eat out.

Be flexible in your planning. This may occasionally need some consideration from your friends and family so communication is important. Prostate cancer support groups are located all around Australia. Seeking support and practical local advice from men who are in similar situations can be very valuable and encourage you to regain control.

Continence nurses and continence physiotherapists are trained to advise you about your specific situation.

COMMON REACTIONS TO BOWEL SYMPTOMS

Many men find coping with the challenge of bowel symptoms after their treatment is one of the most difficult stages of their cancer journey. Although you might think your life has become all about finding the nearest bathroom, you don’t have to be controlled by this side effect. You can take action.

If you are experiencing bowel problems, particularly incontinence, you may be feeling emotions such as embarrassment, anxiety, frustration, anger and social isolation. These are to be expected. Accepting these emotions, dealing with them and seeking support at an early stage can help you cope. If your emotions are affecting your ability to take control and make adjustments, there are healthcare professionals that can assist you. Maintaining flexibility is important for managing incontinence.

COMMUNICATION

Bowel symptoms and incontinence can be managed and in many cases resolved. There are healthcare team members with strategies that can assist you.

It will be necessary for your carers and supporters to be included in your management plans post treatment, during your rehabilitation and when you are traveling outside the home. If you do not feel confident, people on the healthcare team can assist you with information and suggestions for discussing these issues and identifying the people who need to know. Take control, be strategic in what you can do and who needs to know, arm yourself with information and get organized. Keep in mind that others can be affected but they can also support and assist.

If you experience leakage, you may not feel confident enough to be meeting people or be doing your usual activities, such as work or going out for a meal. There is a National Continence Helpline (telephone 1800 33 00 66 from 8.30 am to 8.00pm E.S.T. Mon – Friday). Seeking early help and advice with your bowel problems can be an important step in helping you cope.

EXERCISE

Exercise assists in maintaining a healthy weight as well as prevention of constipation. Regular exercise helps you sleep well, manage your mood and is beneficial for your overall wellbeing. Consult your healthcare team about including exercise as part of your recovery plan. A physical exercise program can also be developed for your longer term health and wellbeing.

MANAGING THE COST OF TREATMENT

The Australian Government subsidises the cost of listed prescription medicine to all residents and eligible overseas visitors through the Pharmaceutical Benefits Scheme (www.pbs.gov.au/info/aboutthe-pbs). Not everything relating to your cancer treatment may be covered by the scheme so check with your doctor when they prescribe a medication or refer you to a service. If you have private health insurance, check what your policy will cover so that you are prepared for any possible financial outlays.

QUESTIONS YOU COULD ASK

As a way of helping the decision process, listed below are some questions you may want to ask members of your healthcare team.

How and when do I get in touch with my doctor or healthcare team if I need help?

What are my treatment options?

What do the treatments do?

What are the benefits and how likely are they?

Are there any other possible side effects?

How could this affect other health conditions I have?

What foods and drinks help relieve the problem?

What foods do I need to stay away from?

What do I have to do and how might it affect my life? (travel to a treatment centre, time off work, care levels)

What changes do I need to make at home?

How might this affect my quality of life?

What are the costs involved?

Is there someone I can be referred to for advice on how to manage these problems?

WHERE CAN I GET FURTHER INFORMATION?

Your general practitioner (GP) Your GP can help coordinate your care and provide you and your family with support and information to help you make informed choices about treatment. Your GP can help you and those close to you manage your physical and emotional health needs throughout the cancer journey, including help with managing your bowel problems.

Health professionals You will meet a number of health professionals (the healthcare team) who will provide advice on treatment and support relating to the prostate cancer care and support role. This team of medical and allied health professionals will meet to discuss the best treatments and support in your situation, and work with you to develop a specific plan to enable support and follow-up care.

Generally, there is a member of the healthcare team who will be your main contact person. This person might change during your cancer journey. If you’re unsure who this person is, ask one of the health professionals you’re seeing. Your contact person can talk with other health professionals on your behalf and can make sure all your health care needs are met.

The benefits to you in having a healthcare team include:

improved communication, coordination and decision making between health professionals about your care

improved treatment planning because all treatment types and options are considered by a range of health professionals

improved coordination of services

improved delivery of services

improved quality of life.

When working with the healthcare team, you may see the following health professionals:

GP: Your first port of call who can provide referrals to other specialists and who will monitor your health

Urologist*: A specialist in treating diseases of the urinary tract system and male reproductive organs

Radiation Oncologist*: A specialist in the treatment of cancer using radiation therapy

Medical Oncologist*: A specialist doctor who uses different drugs to treat cancer (such as chemotherapy)

Endocrinologist*: A doctor who specialises in hormones, body chemistry and bone density

* These health professionals also use hormone therapy, also known as androgen deprivation therapy (ADT), as part of their treatment.

Pathologist: Conducts tests to assess the stage and aggressiveness of cancer

Radiologist: A specialist doctor who examines scans, X-ray and other imaging results

Nurse (also known as Urology or Prostate Care Nurse): Provides treatment, support and assistance through all treatment stages

Cancer Nurse Coordinator: Guides you, your family and the person you are caring for through cancer treatments and liaises with other care providers

It is always important to seek medical advice to confirm the cause of any bowel symptoms you may be experiencing as they may not be a side effect from your treatment. There is a range of health professionals who can assist with your bowel symptoms.

Continence nurses and continence physiotherapists from your healthcare team can advise you on all matters to do with incontinence. Continence Nurse Advisors can be contacted through your healthcare team or the Continence Foundation of Australia has listings of where to find your local advisor (see www.continence.org.au).

Continence Nurse Advisors can assist with:

pelvic floor exercise education

toileting practices during recovery from treatment

continence product assistance for managing symptoms

assistance and education with self-help techniques

financial assistance advice, you may qualify for local or federal funding schemes

information and resources

homecare matters such as waste disposal, infection control measures, bathing and hygiene in the home

advice on fittings and fixtures (e.g. commodes, rails) to assist in toileting

arranging a home care assessment. If you are eligible you may receive assistance with the cost of these home alterations.

FURTHER READING

The Localised Prostate Cancer Pack is a resource for men affected by localised prostate cancer. It provides information on how localised prostate cancer is diagnosed, treatment options, managing side effects and wellbeing.

The Advanced Prostate Cancer Pack is a resource for men affected by different stages of advanced cancer, including locally advanced disease. It provides information on how advanced prostate cancer is diagnosed, treatment options, managing side effects and wellbeing.

Please note: If calling from overseas, the country code for Australia is +61

Glossary & Sources

Abdomen - The part of the body that includes the stomach, intestine, liver, bladder and kidneys. The abdomen is located between the ribs and hips.

Alternative therapy - Therapy used instead of standard medical treatment. Most alternative therapies have not been scientifically tested, so there is little proof that they work and their side effects are not always known.

Bladder - A sac with an elastic wall of muscle; found in the lower part of the abdomen. The bladder stores urine until it is passed from the body.

Brachytherapy - A type of radiotherapy treatment that implants radioactive material sealed in needles or seeds into or near the tumour.

Cancer - A term for diseases in which abnormal cells divide without control.

Carer - A person who helps someone through an illness or disability such as cancer.

Catheter - A hollow, flexible tube through which fluids can be passed into the body or drained from it.

Chemotherapy - The use of drugs, which kill or slow cell growth, to treat cancer. These are called cytotoxic drugs.

Complimentary therapy - Therapy used together with standard medical treatment. Examples include counselling, relaxation therapy, massage, acupuncture, yoga and meditation, aromatherapy, and art and music therapy.

Constipation - Bowel motions (faeces) that are infrequent or hard to pass.

Cultural engagement - Actively involve people with respect to their cultural needs.

Diarrhoea - Opening the bowels very frequently. Motions may be watery.

Incontinence - Inability to hold or control the loss of urine or faeces.

Multidisciplinary team - A team approach to cancer treatment and planning.

PBS - Pharmaceutical Benefits Scheme.

Pelvic floor muscles - The floor of the pelvis is made up of muscle layers and tissues. The layers stretch like a hammock from the tailbone at the back to the pubic bone in front. The pelvic floor muscles support the bladder and bowel. The urethra (urine tube) and rectum (back passage) pass through the pelvic floor muscles.

Penis - The male reproductive organ consists of a body or shaft which starts deep inside the body and extends externally to the end of the penis at the glans (head).

Primary care - Primary Care is a sub-component of the broader primary health care system. Primary care is provided by a health care professional who is a client’s first point of entry into the health system (for example: a general practitioner, practice nurse, community nurse, or community based allied health worker). Primary care is practised widely in nursing and allied health, but predominately in general practice.

Prostate cancer - Cancer of the prostate, the male organ that sits next to the urinary bladder and contributes to semen (sperm fluid) production.

Prostate gland - The prostate gland is normally the size of a walnut. It is located between the bladder and the penis and sits in front of the rectum. It produces fluid that forms part of semen.

Psychosocial - Treatment that is intended to address psychological, social and some spiritual needs.

Quality of life - An individual’s overall appraisal of their situation and wellbeing. Quality of life encompasses symptoms of disease and side effects of treatment, functional capacity, social interactions and relationships, and occupational functioning.

Radiotherapy or radiation oncology - The use of radiation, usually x-rays or gamma rays, to kill tumour cells or injure them so they cannot grow or multiply.

Self-management - An awareness and active participation by people with cancer in their recovery, recuperation, and rehabilitation, to minimise the consequences of treatment, promote survival, health and wellbeing.

Shared decision making - Integration of a patient’s values, goals and concerns with the best available evidence about benefits, risks and uncertainties of treatment, in order to achieve appropriate health care decisions. It involves clinicians and patients making decisions about the patient’s management together.

Side effect - Unintended effects of a drug or treatment.

Support group - People on whom an individual can rely for the provision of emotional caring and concern, and reinforcement of a sense of personal worth and value. Other components of support may include provision of practical or material aid, information, guidance, feedback and validation of the individual’s stressful experiences and coping choices.

Supportive care - Improving quality of life for people with cancer from different perspectives, including physical, social, emotional, financial and spiritual.

Surgery - Treatment that involves an operation. This may involve removal of tissue, change in the organisation of the anatomy or placement of prostheses.

Survivorship - In cancer, survivorship focuses on the health and life of a person with cancer beyond the diagnosis and treatment phases. Survivorship includes issues related to follow-up care, late effects of treatment, second cancers, and quality of life.

Therapy - Another word for treatment, and includes chemotherapy, radiotherapy, hormone therapy and surgery.

Urethra - The tube that carries urine from the bladder, and semen, out through the penis and to the outside of the body.